Stories From the Heart: The Big Cheese

I was quite relieved when I heard that my son had Autistic tendencies, when we had him assessed at 24 months. For a long time I had been feeling that everyone was missing the big picture.  I could see he was not developing as a normal 2 year old should be.

My Danny is now 17 years old and life is much easier. I can’t remember much of those early years. We had another son, Nicholas, when Danny was 18 months and another son, and a daughter, Gabriel, when he was nearly 5.

What I learned from Danny was patience and acceptance, our two other sons, especially Nicholas taught him just about everything else.

Danny is verbal and can talk a lot when he feels like it, as most Autistic children he has his obsessions and they have come and gone; Telletubbies, Thomas the Tank engine, computers. He now knows what is age appropriate and will ask us to leave a room when he is watching something meant for younger children.

He also knows now that it’s not good to take his clothes off at any time, and does not disappear from us at the speed of lightning. Shopping used to be a nightmare  and family holiday involved at least 1 frantic search as Danny would wander into anyone’s house inspect the fridge and make himself at home.

We live on a Game Reserve an hour from the nearest small town.  From a very young age Danny has walked around the reserve, free as a bird. Some days he would leave at 7 am and come back in the dark at around 10 pm. We have various animals including buffalo, white rhinos and elephants, and Danny says hello to them all as he walks past.  They seem to know he is no threat.  I have noticed that after a lot of physical activity Danny is calmer, talks more, and seems happier.

The hardest thing I have ever done has been sending Danny to school.  We are three hours from the nearest city that has a Special school and Danny started boarding there when he was 6. He did not talk for almost a year and cried every week end when we took him back. He still prefers to be at home, and keeps his school life and home life totally separate. He will not wear anything at home that he wears at school, or talk about friends or what he does there unless it’s something that worries him, like when his friend fell down the stairs.

I wanted to give Danny the chance to live away from us and to know that he could cope. For months it felt as if I had lost a limb, as a young child Danny felt like an extension of my body. Our other 2 sons are at boarding school and sending them was much easier.

Danny went through a stage of singing “Jesus Loves Me “ every time we sat down for a meal and making us pray before we ate.  He must have been around 9 or 10 at the time and I realized that this is what they were doing at school.  We have guest houses on the farm and Danny and his brothers came with me to clean one after the guests had left. We were unpacking the fridge and Danny grabbed a block of cheese and said “Cheesus loves you”.

I realized then that a lot of Danny’s life is spent doing stuff he does not fully understand, waiting for people to tell him what to do, and how to react to what’s going on.  I admire, respect him and love him to pieces!

By Kitty Viljoen

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart:Networking

Every parent knows that other parents have the best tips and resources. You quickly learn to rely on your network of like-minded parents for restaurant, playground and parenting tips. But when you learn that your eldest has Autism, that carefully groomed network shatters and you’re left wondering where to turn.

Luckily for my family, Minnesota AuSM (The Autism Society of Minnesota) which offers families living with autism spectrum disorder (ASD) a vibrant network of families and professionals active in the local autism community.

My son was barely two when he was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified), which is on the autism spectrum. We felt lost, isolated and confused. Usually competent and confident people, my husband and I were baffled by conflicting information we received from online searches and uncertain if the school services we were receiving were enough to address our son’s needs.

Through a pamphlet provided by the schools, we learned about AuSM’s Discovery Series, which educates parents of children with a recent diagnosis of ASD on a wide range of topics. This series met over four weeks and provided us with a Resource Directory complete with parents’ recommendations on local services. I still reference that binder three years later, whether I’m looking for a new dentist, photographer, developmental pediatrician, or starting down yet another treatment path.

After the Discovery Series experience, I became active with AuSM and experienced other services they provide. Through workshops and trainings by the nation’s top researchers and practitioners in the field, I know that the private and district staff that work with my son are receiving the best information available. I am confident in the content and quality of the education AuSM provides to professionals and parents in our community.

But membership in AuSM doesn’t stop at education and services. For me, it has provided a way to welcome autism into our life. As we left behind our previous normal life, we felt a loss so great; we grieved constantly. AuSM and its community partners have become our new support system.

Without AuSM’s ready-made network, we would have struggled much more – not knowing all that we needed to know to parent our extraordinary son. Thanks to AuSM, we now have a community that celebrates with us, grieves with us and learns with us. They are true partners in our remarkable journey.

By Shannon Andreson

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Enjoy the Little Things

As a mother of four children on the Autism Spectrum I can’t help but reflect upon what I have learned from them.  My husband and I had many preconceived notions about parenthood before actually having our children.  I thought that because I am a teacher, I would naturally be a wonderful parent.

Fast forward fifteen years, and here is what I have learned.  There is no such thing as the perfect child.  Perfection is just a fallacy that does not really exist.  Everyone has some kind of cross to bear, my husband and I just have the advantage of know what our children routinely struggle within their daily lives just to fit in and get through the day.  After all, what is normal anyway?

I have always lived by the notion that life will always be my greatest teacher.  I didn’t know just how true this was until being given the gift of my four children.  In addition to getting through the challenge of proper diagnosis, I have been on a journey to educate myself about my children’s strengths and needs.

I have learned to be proud of their accomplishments no matter how they may compare to those of their peers or how other people may perceive them.  I have learned to be an advocate and fight for what my children need, whether it be in school, recreationally, or in the community.  Team sports have not really worked out for us.  However, this led us to discover some wonderful places and programs around Western New York that are very Autism friendly.  The Baseball Academy of Western New York, Cradle Beach Camp, Kissing Bridge Adaptive ski program, High Hurdles, and SABAH have all enriched the lives of my children.

I have also learned that in order for my children to be accepted, it requires my husband and I to not only educate those involved about Autism, but to become the Cub Scout den leader, the religion teacher, the PTA mom and whatever else is required for our children to be accepted on some level in all areas of life.
National Autism associations are fantastic for researchers or for informing the public about Autism, but unfortunately, they are not beneficial to the families living with Autism.

There are families, like ours, who have several children afflicted with Autism, who are struggling to finance all of the therapies, doctors, and needs not covered by insurance.  These associations offer no help whatsoever to individual families trying to help their children.  Raising a family with multiple children on the Autism spectrum makes paying for college look easy.

I have learned that other parents of children with Autism are the most understanding and knowledgeable people to talk to.  They are absolutely exhausted from doing whatever it takes to meet the needs of their child, but they are very strong people.  My parents always told me that God gave me these children because I have what it takes to give them happy and fulfilling lives.  I really wouldn’t have it any other way.

My children have taught me more than I could ever teach them.  They have taught me patience, understanding, empathy, and most importantly, how to take life day by day and enjoy the little things that mean so much.  Anthony, Alex, Juliana, and Drew, thank you so much for teaching me what life is really all about.  You are strong, intelligent, compassionate children; and I love you all just the way you are.

By Deana Newberry

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Finding the Joy

“Oh, I’m so sorry” “Poor thing” “It must be really hard for you”

These are just some of the things I hear when someone finds out I am the mother of a child on the Autism Spectrum.

When I first received my sons diagnosis of Autism Spectrum Disorder PDD-NOS it came as no surprise, but it was still a hard pill to swallow. I soon began to realize this would not be an easy road for him or me. I started to think about all the challenges he would face in his life because of the Autism. Worst than that; I began to dwell on them. My days were filled with thoughts of all he would miss out on, the social difficulties he would face, and the many other things that would affect his daily living. I wondered if he would ever make friends, learn his time tables, get a job or even get married.

One day while reading it occurred to me that I was setting my son up for failure…I was selling him short. He was capable of much more than I was giving him credit for. I had been looking only at the negative side of Autism; at only the frustration, anxiety and hopelessness it can sometimes bring. Then one word came to mind….JOY.

Joy is defined as experiencing great pleasure or delight; enjoyment in. Some of may be wondering what delight could I have gotten out of Autism. It’s not necessarily the autism itself, but the experiences I have with a child affected by Autism.

For example, we attend church regularly as a family. I can’t remember the last time I have actually sat through an entire service; my son is unable to sit still long enough or be quite during the appropriate times. So we always seem to be making a quick escape to walk around the hallways or go outside on occasion, weather permitting.

One day during our regular Sunday walk, my son and I sat down on some benches outside the church to rest. After only a few seconds, my son popped up, held out his hand and said, “Mommy let’s dance.” I thought why not. So there we were hand in hand dancing our own version of the waltz; even doing a couple of twirls and dips. My son even bowed at the end of our dance and I curtsied.

Later that day as I thought about what had happened that morning; it dawned on me. Had it not been for my son’s inability to sit still for even a few minutes, or his unexpected verbal outbursts; we would have missed that wonderful moment together, that moment of pleasure, of delight, of JOY.

Since that day I made a decision to look differently at my son’s autism. I began to rearrange my way of thinking; starting with making a list of my son’s strong qualities. He is ambitious, independent, strong-willed, compassionate, and observant; just to name a few.

Next, I decided to keep what I refer to as Joy Journal, in which I record moments in my son’s life; moments of joy, moments that occur because of his Autism.

Yes there are still challenges we face. There are times of setbacks, stress, and even occasional negative thoughts. But now instead of dwelling on those; I pick up the Joy Journal and I read all the times my son and I found the JOY in Autism.

By Rebecca Rivera

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Why Can’t I Pass Fourth Grade?

Several years ago, a student whom I will call Frank, came to my classroom, introduced himself and said to me “I just cannot seem to pass fourth grade.”  I told him we would figure it out together. Off we went to fourth grade for a lesson and I sat at the back of the room and watched my new friend participate.

The teacher illustrated something on the board and then turning to the class said “If you get this, raise your hand.” Frank put up his hand with the others. So far so good. The teacher then turned her back to the class and went on to write something new on the board. Frank kept his hand up, long after the others had put theirs down.

Suddenly realizing that he stood out, he looked very worried, put his hand down and began fidgeting in his seat. He also began flapping his hands and rocking. As the teacher droned on, Frank had tuned out and was missing a great deal of the next lesson. All because there was an implied direction rather than a spoken directive such as “hands down”. He pulled himself together admirably, but this took time, and time was not on his side.

Frank and I next went out to recess. Frank looked for a group to participate in and as he found one, he stood there frozen just outside the perimeter of the game.  He was on the outside, staring in at what he wanted to be his part of his world.

We had much work to do. Frank could pass fourth grade with help, but what he could not pass for was a child who blended in. We devised strategies to help.  These included:

1) When in doubt, just do what everyone else is doing. This gives time to blend and attend.

2) Stim modification….when Frank needed to flap/wring his hands, he went to the sink and did so while washing his hands. Frank came up with his own strategies…..I watched him one day start to flap outside and turn it immediately into a pretend swing of a baseball bat.

3) Added visual supports. For whatever he said he did not understand, we made a visual of what was truly going on. We also used index cards as cue cards that he would carry.

4) Role play..we practiced how to enter a group, how to exit a group, what a proper speaking distance was. We would practice it; he would try it out, and then report back as to how it worked. If it didn’t, we modified it until it did.

Frank passed fourth grade that year and got invited to his first birthday party!

Frank has the potential to be anything that he wants to be. Yet he was lost in a system that failed to recognize his unique strengths and challenges. He came to me completely baffled; with no tools or strategies to succeed. No one had ever sought to empower him by teaching him self-advocacy. No one had ever made it OK for him to be the magnificent child that he was and continues to be.

Frank didn’t fail fourth grade. Fourth grade failed Frank.

By Marie Inglee

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: ADHD 101 for Parents

ADHD has had different names over the years, being first identified in the early 1900’s.  ADHD is a diagnosable illness, however the cause is still debatable.  ADHD is often not diagnosed until children are in grade two or three. There are four main things that parents can do for children who display ADHD-like characteristics:

1. It is important that parents and child to learn as much as they can about the disorder.  Parents need to become their child’s advocate.  Some of the possible ways of doing this are by reading and parent networking groups.

2. Behaviour modification is also used both at home and at school.  Some parents confuse this technique with bribery.  Behaviour modification is a system of positive rewards for good behaviour (e.g. stickers on a reward chart).  Negative rewards are given for inappropriate behaviour (e.g. time out).

3. ADHD is a medical condition, and as such, has to be diagnosed by a physician.  Parents are encouraged to seek medical assistance for ADHD.

4. Parents need to reach out and connect with other parents who are experiencing similar issues.  Parent support and networking are critical to maintaining a positive attitude when parenting a challenging child.

There can be difficult moments when raising a child with challenging behavioural issues.  Parents need extended families and their communities to be supportive and understanding. Parents need to realize that there are lots of happy moments and that most behavioural incidents are over quickly and that’s the time for hugs and kisses!

By Cheryl Thacker

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Parenting Outside the Box

Everyone gives birth to a perfect child—even a child born on the Autism Spectrum.  I am the parent of a child with Asperger’s Syndrome.  As a result, I parent outside the box of normal.  I anticipate rather than react (or at least I try).  Rather than being spontaneous, I plan and prepare.  I struggle with organization, but with an Aspie (an affectionate term) it is almost impossible to live outside of being organized.

Even though she did not receive a diagnosis until she was 12, I knew that she was “different”, but I had no idea these differences were anything more than a unique personality trait.  I still believe structure is what makes her stand out from everyone else and is a big part of who she is.

She sees the world differently than typical children but seeing the world through her eyes has made it come alive again.  She struggles with change and loves structure.  She likes doing the same thing every day and knowing what to expect ahead of time.  She is obsessed with music and drama—from watching and listening to it to singing and acting herself.  She struggles with school and relationships but nothing is as difficult as just living in a world so different from the one she thinks she lives in.

Not once have I ever sought a cure or prayed for a change.  At times I would like to modify her reactions to negative events. I want to teach her how to deal with the confusing life that’s going on around her. There are especially times when I would like to lecture the people that tease her and do things to make her over-react, but that would only make matters worse.

As a parent living outside the box, I’ve learned not to make excuses for her behaviour or apologize for it.  The stares I get from other people no longer faze me.  I don’t care that they think my child is a spoiled, obnoxious brat or that I’m a lousy parent.

If you are a parent living outside the box, forget about what others think about your children and your parenting skills.  Love your children the way they are and create an atmosphere that allows them to be who they are, not what the world says they should be.  Forget about the world’s definition of perfection and create your own.  Perfection, after all, is a process which we strive for but never attain completely.

We are parents of unique children who deserve to be treated fairly, with respect and compassion.  Typical children are not better, just different.  Once the world realizes the contributions our children can and will make to society, they will envy the gift we were given at the birth of our special children.

By Jill Jones

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Keepin’ Your Eye on The Ball

Ahhh high school graduation! It’s the day where children and parents everywhere rejoice in the end of a 13 to 14 year struggle. Finally completed! Or is it?

I voluntarily gave our family a reprieve for a couple years after graduation…not asking, wanting or fighting an uphill battle for anything. I regrouped and re-established friendships and started new ones. I felt the healing process had begun.  I thought to myself “This is the person I used to be” before all the frustration with the endless IEP’s and   meetings with district officials that began over a decade ago.

Here is some sage advice:

“Vacation is good, but never take your eye off the ball”.

Remember how we fought so Johnny wouldn’t regress if he didn’t have summer school? Well the same is true for services after high school. There needs to be a continuum for our young adults. You need to be ahead of the game and keep things progressively moving along.

Programs end at ages of 18 and 22 and often there are times when it seems there is no one to help with the next steps of the journey. But you have to find those people to help you. While your child is in high school, that is the time to prepare for adult hood.

Be in touch with programs through SSI, like “Ticket to Work” in the state of California that helps your adult child get prepared to work. They will provide services to get them there, such as life skills, social skills training, using a bank and learning how to use public transportation.

In California we have Regional Centers that provide more services at this stage of the game. Every state has a different agency and you should know the ones in your area. Get to know them and be on the board if you can.

Network with other parents and find out what your local Autism groups can help with. Don’t wait till the last minute where everything will be taken and there may be waiting lists. If you do wait you might be waiting for a very long time.

In these economic times, it is unfortunate that there are fewer programs to choose from at a time when our children need more.  If your children are going to college many are impacted and it will take more planning to get your child to succeed.

Collaborate, Network, think ahead and most importantly do it with a cool head.

By Christinna Guzman

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: The Glass is Half Full, Today

Every year when school begins I am filled with hope that my son with an Autism Spectrum Disorder (ASD) will enjoy his school year, making new friends, connecting with his teachers, and grasping the subject matter.  I no longer compare him to his older sister or younger brother, but try to find the areas that he is improving, if only slightly.  He is going to school willingly every day since school started, and has made it through without any anxiety.  He is also initiating doing his homework, and completes most of it on his own so far.  He likes his teachers and has made some new friends this year, too.

But, each year I am also filled with anxiety, wondering if he will be able to make friends, how he will deal with the bullying, if he will like his new teachers, if he will make it through the school day without a panic attack, and if he will be able to understand anything his teachers need him to learn.

I have tried to let go of any expectations that I have for my son on a yearly, monthly, weekly or daily basis, but I am only human.  How far behind in math, reading comprehension, and writing will he be at the end of this year?  Will he be able to handle the increased work load without increasing his anxiety?  Will he continue to have friends that want to play with him and will stick up for him if someone is bullying him?

No one knows what the future holds for their children.  I wonder what the future holds for all three of my kids.  I hope that each of them reaches their full potential.  However, the question remains.  What will my son’s full potential be?  I try not to ponder this, because it can literally drive me crazy.

The good news is, for now, I am hopeful that today will be a good day, and this week will be a good week.  Although I can’t be sure what will happen tomorrow, I can sleep tonight knowing that I can choose to believe my glass is half full!

By Darcy Kahrhoff

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Reflections on an Autistic Childhood

When my mother went into labour, she was watching an episode of the old television series Mission Impossible, a portent perhaps of the impossible mission she was about to embark upon raising an autistic child back in the 70’s and 80’s when understanding of the condition was even more in its infancy than it is today.

In fact, I was never technically an autistic child; the closest I ever came to being considered autistic was with a diagnosis of autism residual state at age eleven, which basically declared that I had mostly recovered from the disorder.

But, of course, as we know today, the condition is life-long, and when I was eighteen, I was given a definitive, unequivocal diagnosis of infantile autism.  But before that happened, I was labelled with conditions as divergent as mental retardation, hyperactivity, and social phobia.  Meanwhile, regardless of what was wrong with me, I still needed to be socialized and educated.

A psychiatrist once suggested that I was lucky to have grown up without the autism label–his reasoning being that there were no limits placed on what I could or could not achieve.  While I value the clarity of having a concrete diagnosis, and I would prefer to have skipped all the misdiagnoses; I think there is some truth in what that psychiatrist said.

For the most part, I was raised as a normal child and expected to behave normally.  Where I did have problems, my mother had to rely on her own resourcefulness and interventions that would aid in the development of any child.

To counter my tendency to walk like a duck, my mother placed a book on my head and had me practice walking across the living room.  To encourage me to read, an activity that I found laborious and my special education teachers felt I would never master, my mother always made sure I was enrolled in our local library’s summer reading program; she also provided me with books on my favorite subjects

To keep me socially and physically active, despite having few to no friends, my mother supported my involvement in a number of extra-curricular activities.  Going camping with the Boy Scouts, for instance, ensured that I was rarely without something to do on the week-ends; and achieving the rank of Eagle Scout gave me a sense of self-worth as it also taught me important skills along the way.  I also learned a lot about the world from my mother’s discussions of current events, movies, and TV shows.

As an adult I can look back and see that my mother’s Mission: Impossible has been rendered into a Mission: Accomplished.  Contrary to early predictions that I would never make it beyond the sixth grade, I have a Master’s degree.  Equally important, my social skills are such that no one would ever detect autism; the most they might suspect is introversion.  Certainly, I am not a finished product.  I will continue to develop.

By Gyasi Burks-Abbott

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

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1 in
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Diagnosed with Autism

Over
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Autism Diagnosis a Day

Costs
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Billion per Year

Boys are
4

Times More at Risk